School Absenteeism in Autistic Youth

Our study is exploring the rates of and reasons for school absences in autistic students. Specifically, we are conducting a 20-day daily survey to learn more about child and family routines that impact children missing partial or full days of school. We’re also interested in how this interacts with parent stress.

What are the goals of the study?

We hope to learn more about the daily fluctuations in child behavior and routines that contribute to absenteeism so we can improve supports for schools and parents when children miss school.

What will happen during the visit or online?

1 hour virtual visit to answer questions about parent and child, then filling out a brief online attendance survey each day for 20 days

How will this help families?

We are working to better characterize the barriers that make consistent school attendance difficult for autistic children, and to better inform supports for parents and schools to make school attendance easier.

This project will evaluate the effectiveness of MINDful TIME, an 8-week mindfulness-based program designed to improve mental health in adolescents with autism spectrum disorder and their caregivers. MINDful TIME includes weekly psychoeducational group meetings conducted through videoconferencing and use of a commercially available mindfulness meditation app. We will also explore whether caregivers in the treatment group demonstrate improvements in quality of life.

This project is a collaboration between researchers at the Southwest Autism Research & Resource Center (SARRC) and the Autism Brain Aging Lab at Arizona State University.

Why this study is important: At least half of individuals with ASD experience clinically significant anxiety or depression. Mood symptoms increase significantly from childhood to adolescence and remain elevated during adulthood. Additionally, parents of children with ASD report higher levels of stress than parents of typically developing children or children with other disabilities and may experience higher stress once their children enter adolescence due to increased social-emotional difficulties. Notably, research from our group and others indicates increases in stress and anxiety during the COVID-19 pandemic in both adolescents with ASD and their parents. This project aims to improve mental health among teens with ASD and their parents through a telehealth mindfulness intervention.

What are the goals of the study?

This project will evaluate the effectiveness of MINDful TIME, an 8-week mindfulness-based program designed to improve mental health in adolescents with autism spectrum disorder and their caregivers. MINDful TIME includes weekly psychoeducational group meetings conducted through videoconferencing and use of a commercially available mindfulness meditation app. We will also explore whether caregivers in the treatment group demonstrate improvements in quality of life.

What will happen during the visit or online?

Participation involves: 1-2 hour virtual intake visit to determine eligibility; Virtual group intervention sessions (2-hour sessions that meet weekly for 8 weeks); Up to 4 virtual data collection visits before and after participating in the intervention (1-2 hours each).

Teens and caregivers will: Attend an 8-week group telehealth intervention*; Learn strategies that may help with management of stress, anxiety or depression; Receive free access to a mindful meditation app (Ten Percent Happier) and asked to regularly use it throughout the study period.

*If you do not have access to the internet, our team will provide assistance for those who qualify.

How will this help families?

This project aims to improve mental health among teens with ASD and their parents through a telehealth mindfulness intervention.

Dr. Eggebrecht and researchers at Washington University in St. Louis are mapping brain function in children with autism spectrum disorder with diffuse optical tomography.

What are the goals of the study?

Dr. Eggebrecht and researchers at Washington University in St. Louis aim to investigate brain function underlying development in children who have or are at risk for developing Autism Spectrum Disorder.

What will happen during the visit or online?

Children will complete a 1-hour brain imaging scan and developmental testing at Washington University School of Medicine in St. Louis. Parents will complete online and phone surveys from home. Families will be compensated $25/hour for their participation.

How will this help families?

We hope that, in the future, society may benefit from study results which increase our understanding of typical and altered development of brain function. We hope that in the future, optical imaging will complement the current brain imaging technologies in the management of a variety of patient populations.

In our international study, we want to find out how Selective Mutism differs from Autism Spectrum Disorder. We are particularly interested in whether the situation has an influence on certain symptoms, for example, whether symptoms occur just as frequently at home in a familiar environment as in an unfamiliar environment. A symptom could be described as a sign by which a particular mental illness can be identified. In general, mental illnesses are associated with various symptoms. Therefore, in order to recognize a mental illness, it is essential to know as many symptoms as possible and to know how often and when they occur. This is particularly important for diagnostics, but also when it comes to providing the affected children with the best possible therapeutic support. We are also interested in surveying parents of neurotypical children without mental illness to determine possible differences. The study involves six questionnaires (approximately 40 minutes) that are completed online.

What are the goals of the study?

To gain knowledge on symptoms of selective mutism and autism and whether those are context-dependent.

What will happen during the visit or online?

Fill out questionnaire

How will this help families?

There are several hints that selective mutism is comorbid in a significant portion of autistic children. This research will enhance our understanding of selective mutism and autism and will help differentiate between the two conditions.

We want to understand autistic adults’ experiences with communicating without words because because individuals with autism tend to have difficulties using nonverbal communication. We want to be able to help the autism community with communication skills if that is something the study indicates is important to them, and help create interventions targeting nonverbal communication if the autism community indicates a desire for it. This study began at the University of the Sciences in Philadelphia by Dr. Ashley de Marchena and a team of students as part of the InterAction Lab and is now being continued at Drexel University’s A.J. Drexel Autism Institute.

What are the goals of the study?

We are interested in developing supports to help improve communication experiences for adults on the autism spectrum, but first want to hear from the autistic community about what (if any) supports are wanted or needed.

What will happen during the visit or online?

Participants will be asked to complete about 60 minutes of online surveys related to communication, autism traits, and general information about themselves. The surveys should take about an hour to complete. Communication differences will be accommodated.
Participants will receive a $40 Amazon gift code after you complete the study.

How will this help families?

The results of the survey will be used to develop supports for both autistic and non-autistic people to facilitate stronger, more comfortable interactions.

Interested parents should know that we would like them to have the opportunity to share their story of being a parent to an autistic child. The five-minute Zoom interview is a quick interview to give parents the chance to share their experiences and participate in research. We are enrolling families with autism and other disabilities in the study.

What are the goals of the study?

The study goals are to learn about parents and families of children with autism and other disabilities to better understand their experiences as parents and caregivers and to understand the relationships they have with their children.

What will happen during the visit or online?

Parents will complete an online consent form, questionnaire, and five-minute Zoom interview.

How will this help families?

The research may ultimately lead to a better understanding of how to help families affected by autism and other disabilities to thrive and cope as parents and caregivers.

The genetic changes we study in TIGER3 have been connected with autism and developmental disabilities, but we are just beginning to learn how those changes might affect each person and family differently, and what effects might be shared versus unique across those genetic variants. By learning more about the shared and unique effects of these rare variants, we aim to contribute to (1) better understanding of co-occurring medical and behavioral conditions, and (2) development of individualized supports for affected individuals and their families.

What are the goals of the study?

In the TIGER research study, we are learning more about individuals with genetic events associated with autism spectrum disorder (ASD), intellectual disability (ID), and/or developmental delay (DD). We hope to better understand and describe how different gene changes influence the development, behavior, and experiences of children and adults. Individuals with these genetic changes may have neurodevelopmental differences that we would like to better understand.

What will happen during the visit or online?

Eligible families participate in a consent phone call, and are then invited to complete a series of video- or phone calls to assess for autism-associated features, adaptive skills, cognitive skills, and medical history. Caregivers are also invited to complete a variety of online questionnaires, including measures of adaptive behavior, treatment history, sleep habits, gastrointestinal symptoms, social-emotional functioning, and executive function. Biospecimen (blood or saliva) collection is completed remotely. Finally, families are offered a feedback session with a clinician and a written report of standardized measures and recommendations.

How will this help families?

Families will be compensated $100 for their participation. Participants may receive feedback about their family’s genetic event(s). Families will also receive written and/or verbal feedback regarding adaptive behavior, social communication skills, language skills, and cognitive skills as available from completed study activities.

There is a need for detailed and reliable information on the prevalence of alcohol and drug use among adolescents and young adults with ASD. This study will produce important new knowledge about this, as well as verify or refute risk and protective factors of alcohol and drug use within this population. Study findings will help inform identification and prevention/intervention work.

What are the goals of the study?

The goal of this study is to learn more about the development and experiences of adolescents and young adults (age 12-24) who have been diagnosed with autism spectrum disorder as they navigate from adolescence to early adulthood. We are especially interested in their exposure to alcohol and other drugs.

What will happen during the visit or online?

Participation involves 4 visits over 3 years and consists of short interviews and questionnaires. Visits can be done in-person or remotely. Each visit is one year apart. There is also a parent/guardian component for parents/guardians of eligible youth.

How will this help families?

Findings from this study will help researchers learn more about what helps and hinders development in persons who have been considered to be on the spectrum. This will help inform future research and assist in the identification, prevention and intervention work associated with alcohol and drug use disorders.

What are the goals of the study?

We are interested to explore how both neurotypical and autistic adolescents and adults initially perceive people in conversations. To explore whether perceptions of the adolescent in the video are different depending on a participants age or diagnosis. Furthermore, the second part of the survey will state if the adolescents in the video has autism or not, we would like to discover whether this will alter participants initial perception and or judgement of the conversation.

What will happen during the visit or online?

Participants will watch videos (without sound) of an adolescent having a conversation with two people you can’t see in the video, then state their initial perceptions of the adolescent using slider bar questions.

How will this help families?

Could provide insight for families into how their autistic adolescents may perceive social situations, how they interpret other peoples conversations. Similarly if Adults with autism participate the research highlights how communication is expressed differently, promoting a non judgmental mindset or potentially a deeper understanding of how people can be perceived no matter the social situation.

There is a clear unmet need for new medicines to treat irritability in children with ASD that do not have the metabolic and weight adverse event profiles of the currently approved treatments. Cannabidivarin (CBDV), a nonpsychoactive phytocannabinoid with no appreciable tetrahydrocannabinol (THC), has potential therapeutic effects on irritability and disruptive behaviors, repetitive behaviors, sociability, and quality of life, as well as the capacity to reduce inflammation.

What are the goals of the study?

This study aims to examine the efficacy and safety of CBDV, with a primary aim of studying its effect on irritability in children with ASD.

What will happen during the visit or online?

It will take about 16 weeks to complete this study. During this time, we will ask you to come to Albert Einstein College of Medicine 4 times for study visits. (Baseline, Week 4, Week 8, and Week 12). In addition, we will ask you to complete 5 remote visits. Two out of these 5 remote visits will involve assessments performed over the phone, as well as a visit to your local QUEST diagnostic center (at no cost to you, at Screening and Week 2 ) The other 3 remote visits will only involve assessments performed over the phone (Weeks 6, 10, and 14). On-site visits include a physical and neurological exam, measuring vital signs, lab work, and completion of assessments/questionnaires. An ECG will be completed at Baseline and Week 12.

How will this help families?

The goal of this study is to see if CBDV can improve irritability and disruptive behaviors in children with autism spectrum disorder, without the weight gain and metabolic side effects of the FDA approved antipsychotics aripiprazole and risperidone.

Researchers at Deakin University are seeking participants for an online study investigating how and why personality traits, characteristics, and behaviours associated with autism and anorexia are related.

What are the goals of the study?

We are doing this research because there is evidence that autism and anorexia might overlap, and we want to understand this overlap better. Better understanding of factors that contribute to the overlap between autism and anorexia will help us to better detect these conditions and offer appropriate support to those who require it.

What will happen during the visit or online?

If you choose to participate in this study, you will be invited to complete an online survey and computerised tasks. The study will take approximately 1 hour to complete, and upon completion, participants will go into the draw to win one of 10 AUD$150 gift cards.

How will this help families?

Improving understanding of these disorders will help us identify appropriate support for individuals with autism and improve clinical practice.

The study of people with new onset face blindness points to a particular brain circuit. We are investigating if this same brain circuit is involved in face recognition difficulty in individuals with autism. If successful, this study may identify new ways to improve face recognition ability.

What are the goals of the study?

Some individuals with autism have difficulties related to face processing and recognition, which can have substantial effects on everyday life. For this study, we hope to figure out where these face processing difficulties arise in the brain. This research could help us provide targets for treatment and could aid in the development of biomarkers for future detection.

What will happen during the visit or online?

The study involves one virtual visit and one visit to Boston Children’s Hospital. The first study visit will involve a series of computer activities designed to measure face processing and should last around 2 hours. The second study visit will involve an MRI, during which the participant will complete additional face processing tasks. This second visit may last up to 3 hours. In between these two visits, we will also share a link to some questionnaires to be completed online by the participant and a caregiver.

How will this help families?

It may lead to new treatments for face recognition difficulties which may help social development.